At the end of last month, the Guardian seemed to have its own endometriosis week. I wasn't quite sure where the 'news hook' for this came from, and initially I wondered why it was making headlines in a week when surely we should have been talking about socialism. But then my endometrial tissue has taken up far more of my evenings over the last 30 years, so I figured I'd ride the wave while it lasts.
I quite possibly have endometriosis. I certainly have, or used to have, the level of period pain that would indicate it. For years, I would hide away for hours every month, writhing, sobbing, furious and terrified, waiting for the codeine to bite me, the whisky to dull me, and my sanity to return. Few people ever got to see that, and the ones who did often didn't quite believe it. For each of my university exam terms, I went on the Pill, despite the side effects (weight gain, spots, tits like grapefruit) so I wouldn't be bleeding during the wrong week. Later, it affected my choice of job, the hours I could work, and the length of commute I could contemplate. I can tell if you are experiencing the kind of pain I used to experience. It turns you grey, you can't think straight, and you would genuinely lose a tooth, or a toe, or a family member of medium significance, if it would only just go away.
The first time I "did something about it" I was 30, and it was because for a year I had a job with private health cover. I felt that the cover meant they could demand more of me, so I should demand more too. I had a vaginal ultrasound and then an investigative laparoscopy in a v swanky hospital in Oxford. I ordered a smoked trout salad which they brought me at 3 am. I remember the genuinely lovely gynaecologist who told me that my uterus was retroverted (no big deal except when it is) and there were a few 'possible endometrial spots' but he couldn't be sure without more invasive investigation and he didn't think it was necessary unless I did. Which I didn't, as I'd handed in my notice because I'd got my job at NGO X and my private health cover was about to cease.
But it was useful information, and I looked after myself a bit better after that: watch how much you drink when you're premenstrual, watch how you plan your holidays, never make any major life decisions when you're within a week of bleeding (when you're actually bleeding, major life decisions are the least of it, so no worries). If you have to go home, go home.
Which saw me through, mostly, until I hit my 40s, when shit totally went pear shaped. One of the few good things about my dreadful awful periods was that they were pretty reliable, timing-wise, and they were never that heavy (though of course that could be because the bleeding was happening in other places). I could tell the instant they started, often before anything had appeared. I wasn't one of those people who randomly bled through their clothes. Until I was. They used to come, nearly kill me, then go. Then they started coming, going, then coming back for more. They were slower and darker and heavier and bleaker and, while not so acute, generally just a whole lot worse.
This coincided with the beginning of our Great Move North, so I would regularly (but not predictably) find myself sobbing in train toilets, improvising san pro from wodges of cheap-as-possible paper towel. There was one long, dark bike ride in the rain, back to a slightly damp room in a house with no warmth, that I will never forget. I took to carrying supplies - pads and drugs and my little microwaveable heat bag, a long-ago present from a long-ago boyfriend - up and down the country, just in case. It wasn't life threatening, but it was unutterably miserable. I can't remember what sent me to my GP, the changes were incremental but something must have tipped me over. She was marvellous - she was always marvellous - but she said that she wasn't the practice expert on 40+ hormones, and I should speak to Doctor Claire.
Doctor Claire rang me a couple of days later. I was sitting on a bench at Radley station, waiting for a train. Can you talk? she said. Sure, I said. M was sitting next to me. Later, he told me (and he only heard half the conversation), wow, I had no idea. And he had been living with me for over 10 years. Doctor Claire recommended a Mirena coil, but I wasn't keen on that. I have heard about how they get those things in, I said, and let's just say I'm not going there without sedation. I haven't had children, remember. Well, fair enough, she said. We can do that (the sedation, not the children), but maybe we should check out your tolerance to the hormones first. Try this mini-pill for three months. If you have any problems you can stop, and if it helps then we can either knock you out and stick a Mirena up you (I paraphrase), or give you an implant.
The next week, I went to pick up my prescription. The advice I'd had from Doctor Claire was that this particular pill had a transformative effect in around a third of cases, made naff all difference for another third, and for the final third, would only make things worse. You do not want to read the list of possible side effects. I thought myself a person who did not want to take hormones, having felt the combined Pill's side effects a huge price to pay for admittedly manageable periods. I knew myself to be unlucky in blood. I was not expecting to be in the magical third. But hats off to Doctor Claire, who at that point I had not actually met. By the time I did meet her, I had taken to singing 'Wo-oh, it's only Cerazette but I like it, like it, yes I do'.
This drug CHANGED MY LIFE. Since I started taking it, over three years ago now, I have not had a period. Not a one. Not even a little bit of one. Not a twinge. No PMS. No pain. This is like being a child. Or a woman without a womb. Or a woman who's had the menopause. Or maybe a man. Someone who feels the same, every day of the month. Who doesn't get taken out of circulation three or four days at a time, and who can trust her own judgement from week to week. I don't shout at people. I don't sob. I don't think 'tonight, I will walk down the middle of the road and see if I get hit by a bus, and if I do get hit by a bus, I will see if it hurts more than this'.
Full disclosure: I rarely got through my PMS and period pain without accessing other mind-altering substances, mainly alcohol and prescription painkillers, and usually both. If I'd been all about the flower remedies and the homeopathy, I might have handled it differently, but there is still no way on this sweet earth that I would have actively enjoyed riding that crimson, latterly sepia, wave. I made many efforts to accentuate the positives of the emotional rollercoaster (to be fair, I have done some excellent ranting, some of which can be accessed via the anger and hormones tags below), and gained meaningful awareness that one's mental state can be affected by things produced by one's body as well as things one has consumed. But with hindsight that was all set against a feeling that the alternative was weight gain, spots, and tits like grapefruit. And the slightly lobotomised dullness that came with all of that. I thought that this pain was part of the female experience. It was part of the miracle of life. It should, as far as possible, when it's not making you want to cut out your own uterus with a carving knife, be embraced. We're feminists, remember? This is WOMANHOOD. Not long after we met, M bought me a patchouli-scented second-hand copy of The Wise Wound. He meant well, but after much reflection I concluded that the hidden energies of my own moon cycle can basically do one.
For realz. As one of the lucky third of Cerazetters, what I feel now is only the absence of bad things*. I have to struggle to remember them. I only remembered during the writing of this post what it was that first took me to the GP. I'd had three dreadful periods on the trot and I was beginning to think that I could only wear black pants and trousers and should have some kind of ceremonial bonfire for all the others. I was also getting through so many of those little packs of tissues (mostly for the crying, but also for the emergency san pro improvisation) that I'd started buying the shoebox-sized multi-packs. So I went to the doctor, the excellent doctor, and she said 'how can I help today Jo?' and I said 'I'd like a hysterectomy please, can I get one on the NHS or if not how much does it cost?'.
So she did her excellent job, and Doctor Claire prescribed the Cerazette, and three months later I went to see her. She said, how are you getting on with it then? I said 'I think this may be the best thing that has ever happened to me in the whole of my life'. She said, well let's not mess with it then.
And three-plus years later, here I am. I've kept all the empty blister packs as souvenirs (yes, really). Every six months I ask for a new prescription at my new GPs, and they book me in for a check up. My blood pressure is always a bit high the first time they take it, and I explain that it's because I'm worried that it will be too high and they won't give me a new prescription. How are you getting on with it? they say. It's the best thing that ever happened to me in the whole of my life, I say. And they write me a new prescription, and my blood pressure drops.
joella
*I do sometimes think I may be a little harder than I used to be. But then stopping bleeding is not the only thing that's happened to me in the last three years.
